Migraine

Ok guys, This is a topic I am actually a litte scared to bring up. I know that there are some of you that deal with fibromyalgia along with your migraines. Do you mind if I ask about your experiences with it. What do you ahve to deal with and what can you do about it?

My body has been giving me many "warning signs" for about the last 2 years, but I made myself ignore it. As you obviously know, I deal with the chronic migraines. I also have IBS, TMJ, depression, and anxiety, allergies. This is a much larger list that I think anyone would care to deal with. So when I got my warning signs, I just made myself push it aside so I didn't have to add another issue to the list. How could anyone have so many chronic illnesses at once?

This has only popped into my head as I remembered that my grandmother and aunt both have dealt with it. Is is a hereditary thing? I know that I ahve had some symptoms for at least 2 years. When I was 17 I was really sick and at one of my Dr appointments, I thought I would mention the aweful pain that I kept getting. She told me that I almost sounded like I was talking about fibromyalgia, but she just wasn't sure if that was the right fit for the situation. Once I heard her say the word fibromyalgia, I immediately got a little defensive and just told myself it wasnt even a possibility. Once I left her office, I promised that I would never mention this pain again and I would be fine to just "cope" with it. I was not about to add another illness to my list, I just didn't think I could handle it.

I don't know too much about it, just the basics like the muscle pain, terrible sleep issues, fatigue, stiffness. I have a major sleep issue I have for a while and I am always so exhausted. I will get the terrible muscle aches and even spasms that I just can't control. It isn't constant and usually isn't even in the same areas all the time. I can have a bad day where my neck and shoulders are painful and then another where its my back or hips that are painful or even really tight and stiff. It just always seems to be different and its like my body just randomly says, hmmm lets make this spot hurt today and move onto here tomorrow Today all of the muscles in my back and shoulders ahve been really tight and achey. I am 19 years old, I should not feel like a crippled 90 year old!!

I would absolutely hate to go back to my doc and mention another problem to her! They will think that I am just a nut job with all that I have going wrong with me . As long as I have ignored it though, I want to even just understand what is causing my pain maybe even help myself feel better. I would be so so happy to find a reasonable explanation for the pain, that wouldn't take even more time and management.

Any suggestions, tips, ideas? Please feel free to share your situation or thoughts with me. Does this even sound like the same thing that you guys deal with or am I just losing my mind slowly but surely ? How were you diagnosed? Thanks for any information, guys.

Many many
Alaura

Good Morning,

Well one of the best places for you to go is another health central site. As you have learned what a great job they do with Migraine education, they also do with other diseases and disorders.

Chronic Pain

I see at this site info on TMJ and fibromyalgia. It's a good starting point.

Alaura you have been learning the past few months about dealing pro actively with your migraine disease. The same is true for any other problem you have. Deal with it head on and found out how best to help yourself. You are a bright intelligent young woman, knowledge is power!!!

Hope this helps.

Cindy

I know that I can't get much information on it here, I just thought maybe some of the others who deal with it along iwth their migraines could tell a little about their situation.

I know that I should see my Doc but I have just avoided thst, kind of being afaid to think if its a possibility. But maybe if I do see my doc they can give a reasonable explantion and help me get rid of what ever I am experiencing. I should take care of the rest of me just as I do my migraines.

Thanks for the link. I always forget that healthcentral covers about every health topic out there. I never think to look at any of the other sites, I am heading over to check it out....

Allura, I 17 when I got sick with Fibro, and CFS. Everything that you described is exactly what happened to me except throw in all the testing that to explain the symptoms that are unique to HMs that I was having that didn't lead an where.

Can you go back to the doctor you saw when you were 17? Also can you document an illness to about 2-4 monthes before you saw the Dr. and did it involve high fever? If so that would be the absolute best place to go with getting your dx. Why? That documentation at this point would point to Chronic Fatigue Syndrome and Fibromylagia.

Would this explain all of the symptoms and conditions you listed. Yes, because they are very high comorbidity to FMS.

There is no cure for FMs and being young as you are, the disabling nature of it is extremely high. We can learn to manage and adapt but the disease is always there.

Yes, BTW it is genetic both my parents had or fit the profile for FMS and 2 of my three brothers have it.

Mary in NM


Mary in NM

Alaura,
I was 39 when I was diagnosed with FMS. I am now 58. It took 2 yrs. for anyone to be able to tell me what was wrong with me because back then, not many doctors knew about FMS.

I won't go into a long discussion but a rheumatodolgist (can't spell) can diagnose you. There are 8 trigger points on the body that identify the illness. Some sufferers have more muscle pain than fatique or vice versa. I always had more fatique than pain.

I was a flight attendant for 30 years and I managed to live with the illness after I learned how to cope with it. You have to pace yourself and just like with migraines, you learn what you can and cannot do.

Personally, my FMS was easier to deal with than these migraines. No one in my family has it. I was never told it is inherited.

I wouldn't speculate about whether you have it or not. Go see a doctor and let him tell you. Good Luck and keep us posted.

I am so sorry that you are having so many health problems at such a young age.
I pray you will be able to get some help for them!!

parisbabe

Yep. There's the achiness, and the fatigue (sometimes exhaustion), and the sleep issues, and all that goes along with it. Personally, my fibro came along for the ride with my thyroid stuff and I'm pretty sure it was exacerbated by the muscle spasms following my thyroidectomy,as well as the sleep disruption from the Graves'-induced insomnia (not so)merry-go-round.

Mine manifests itself primarily in my upper back, shoulders, and to some extent neck (near the base of my skull). I will spasm and get very achy, like a person does with the flu. Weather shifts can set this off, as can working at the wrong height of counter or table and that kind of thing. Working in conditions that aren't very ergonomically user-friendly to my needs can be killer.

Primarily, as far as meds go, I use Soma for my fibro, which is the only thing we've found that will help me get that restorative sleep, and will help relax things and alleviate the pain. I also have my beloved chiro doc helping me work things out, too. When it's really bad, and the Soma isn't cutting it, and nothing else is, either, I have Lortab, but I really limit it because I hate the oogy feeling, and it can cause me insomnia (I've gotta be different!). I start with a half dose of that. On a really bad month, I might go through three to five tablets total. On a better month, which most are, I might use one tablet. Beyond that, I've got stretches, and I've used heat and ice when I'm flaring. I also have several pillows, so I can configure them in any way that's most comfortable. I have a high pain threshold, and to be honest, I usually don't take any of my meds for fibro pain until I'm at the point I find I'm holding my breath reflexively against the pain. I'm in bad shape before I take meds. Mostly I like to rely on comfort measures as much as possible. This isn't as easy to do in the summer, where I work at an oddball-height counter, though.

Yes, it's true that rheumatologists are usually the doctors that diagnose and treat fibro, but it's actually thought to be a neurological syndrome in general, tied to unusually heightened/sensitive reactions to pain stimuli. When my rheumatologist doc left the state, my neuro took over my fibro care. Keep in mind that the idea of having to have X many tender trigger points to get a diagnosis was never meant to be a diagnostic criteria. It was meant to give a standard for a study done on fibromyalgia, and it just simply stuck. My neuro always maintained that the pain was there, and the pain was real, and who's to say if you only had a couple of trigger points, that it couldn't be fibro. Why should you have to have a magic number, when everyone's so different? He believed you shouldn't rely on numbers, but on the patient and symptoms. Man, I miss my neuro doc (who retired). He understood.

As for getting diagnosed, I went to a rheumatologist with clear cut symptoms and research, seeking a diagnosis. I highly suspected, and he agreed.

Alaura,
Yeah, I agree with pretty much of what Dragondrool said in his post. I was not meaning to say that you had to have all 8 of the trigger points or had to meet some "exact" diagnosis, to qualify for having FMS. If I gave that inpression, I'm sorry, I was just not going into discussion as was tired and having migraine when I wrote the post.

I tried so many anti-depressants and muscle relaxers and all they did were make me loopey and dopey and sleep all the time & I couldn't work, so I quit taking anything. And don't take anything now. The fatique can be overwhelming!!! I wish they had a pill for that!!

Everyone is different. Best to get checked out by a doctor and check out FMS sites. I really hope you can find answers and help for your pain. Keep us posted!!!
parisbabe

Hey guys,

Thank you for the info and sharing your story. This is something that I guess is time for me to look into. I will let you know what I find out. I am starting with a pain diary that way I have some solid info to take to my doc. I am really hoping that this is an issue that can just easily be explained and taken care of. I just have to see. Thanks again

Alaura

Nope. I didn't think you implied that at all. I just know that the "x" number of trigger points to get a diagnosis is a common misconception among medical professionals in general, because they don't understand the whys of it in the first place. I've read several times over that it wasn't supposed to be diagnosis criteria, but many misguided docs still use it that way. My neuro doc pointed this all out to the med student that sat in on my appointment one day, as he proceeded to poke and prod all the trigger points on me to point them out to the med student. Which of course flared me right up, too. The things we do for science!

quote:

Originally posted by parisbabe:
Alaura,
Yeah, I agree with pretty much of what Dragondrool said in his post. I was not meaning to say that you had to have all 8 of the trigger points or had to meet some "exact" diagnosis, to qualify for having FMS. If I gave that inpression, I'm sorry, I was just not going into discussion as was tired and having migraine when I wrote the post.

Like Paris said, the fatigue can easily be the worst part, because there's not much you can do but look after yourself and wait it out. Sometimes it's so very hard to be patient, because you don't have the oomph to wait.

Droolie- How aweful that you were a guinea pig! I do have trigger spots, my physical therapist is working hard on them and they are so so painful! You ahve more paitence than I do!
I agree, the fatigue is the hard part. Even if I don't have fibro (which I am obviously hoping for like crazy!), I at least have a big issue with fatigue, it get very hard sometimes!

I,ve had the poke and prod done by a med student, who was learning from a Rheumatologist doctor. He also found about three or four other trigger points on me, that aren't the usual ones. However, he was ready to dismiss all of the trigger test because of the fact I was having my period at the time. That alone he said was aggrevating all the normal trigger points.

Don't be afraid to be a teaching tool for doctors, Allura, some of the most acurate testing and through exams I have ever had was from some Dr. who were in training. They are a lot more willing to say I don't know and then want to know what is going on with you.

As for the idea of genetics and how we get FM, I think one of the best books I have ever read on FM is by Dr. Pelegrino. I know I butchered the name, but it should be close enough so you can find do an amazon search. He's a doctor who has FM and totally gets it, giving a through study to the subject.

As for the fatigue being the worst part of it then, you need to determine if it is CFS or not. Some people would say they are the same thing, but there are distinct differences between the two.

Mary in NM

mary- i will have to look into cfs, that is one that i don't believe i have heard of. you do have a good point, the docs will be more thurough if they are teaching wouldn't they? i will look into that book also, thank you for the suggestion. you asked about my doc that first mentioned it when i was 17. i would love to go back to her, she was wonderful, but she is a pediatricain, so i can't. why do you mention being sick shortly before that point? i don't recall any big illnesses like that...

i wanted to ask, since the topic of trigger points was brought up. what do you guys do to treat your trigger points? mine have been horrid this weekend, with muscle spasms and tons of pain. what do you do to help that feel any better? i am hoping that my physical therapist will do another massage today that helps for a short time.

i have a follow up with my pcp in just 3 or 4 months. i think that i will do a pain and fatigue journal and take it with me for that follow up. i can then see what she thinks from there and were i need to go next.

thanks again for all of the info guys. it is aweful that you deal with this along with your migraines, but it sounds like you manage pretty well. i sure bet it get hard sometimes though. i am thinking of you all

alaura

Alaura-
I can only say from my experience, I never had fatigue/achiness/mood issues/migraines/random pain until my thyroid went crazy. There is some interesting research out there about T3 treatment for fibromialgia. I currently take T3 (cytomel) for hypothyroidism as I don't convert T4 to T3 (armour has T3/T4 in it) well due to severe adrenal fatigue. I built up a hefty amount of Reverse T3 (an unusable form of thyroid that attaches to receptors)do to this fact.

Thyroid issues tend to be genetic as well. I would get your Free T3 checked. Its worth asking your doc about it!

When my shoulders get really snarly, I've got a good friend at school that knows how to manipulate and release the trigger point, breaking up the encapsulations. My chiro doc keeps tabs on those and the trigger points at the base of my skull for me, too. I'm not sure what all it is when she pokes, prods, and rubs, exactly, but whatever it is, it's five seconds and magic. One day I had a migraine, and when she adjusted and then explored those trigger points, it flat-out melted away. I think I had probably triggered off of whatever she fixed.

quote:

Originally posted by Alaura:

i wanted to ask, since the topic of trigger points was brought up. what do you guys do to treat your trigger points? mine have been horrid this weekend, with muscle spasms and tons of pain. what do you do to help that feel any better? i am hoping that my physical therapist will do another massage today that helps for a short time.

I haven't heard as much lately, but for awhile a popular theory about thyroid disease, CFS, and fibromyalgia was that they are three manifestations of just one process, which might explain why they tend to show up together, like when some of us get fibro coming along for the ride on the heels of thyroid issues. I think it's an interesting concept.

I can tell you that I do much better with Armour than I do with synthetic thyroid hormone, and I really do think that it's the T3 that helps the most. I do better with the thyroid stuff and the migraines and fibro with natural hormone with T3 on board. I'm not a good T4/T3 converter, either, and I since I no longer have a gland, and the slivers still there are non-functioning, I'm certain I need T3 supplementally. I think it's cruel for the endocrinologist and pharaceutical powers that be to insist that synthetic T4 only is just fine for everyone, without any T3 supplementation. But that's a whole other issue/debate entirely.